When Mary Ann was diagnosed with Parkinson’s Disease, our daughter was a Senior in High School and our Son was in the Eighth Grade at a school in which that was the last year. I had gone on ahead in February to begin a new job in a city about a six hour drive away. Mary Ann and the kids stayed at home to finish the school year while I lived in the new city without them.

It was a phone call. “The doctor says that I have Parkinson’s Disease.” In that moment our lives ended as they had been and a new life began. It has been a time of discovery for Lisa and Micah. All of us needed to incorporate this new reality into our lives in different ways, as bits and pieces of understanding of its impact revealed themselves to each of us. Our experiences have been completely different. I could no more describe the feelings that Lisa and Micah have had than I could Mary Ann’s feelings. They alone know the journey they have been on. I know only what I have seen and heard when they were still at home, and what I have seen and heard of them in the years from then until now. They are thirty-six and thirty-nine now – both married and along with very well-chosen spouses, raising our granddaughters.

For you whose family has come to know the presence of chronic illness, make no assumptions about how that presence is impacting anyone else in your family, especially the kids. It is tempting to project our adult awareness of all the implications of the disease on to our children. It is tempting to try to insulate them from what we know of the truth. It is tempting to lean on them and use them for support that they are neither ready nor able to give. It is tempting to loosen boundaries on their behavior to compensate for the pain their parent’s chronic illness brings into their lives. It is tempting to allow the chronic illness to draw attention away from them and their needs as they grow.

Let’s just admit the simple truth. Parkinson’s joined our family. We didn’t invite it in. We had nothing to say about it. It became part of the family. Two of the choices we had were to pretend it hadn’t moved in, or make it the center of our world. I suppose we did some of both, each of us in different ratios of pretense and dominance. One thing we did (I hope this is the way the kids remember it) is to just deal with whatever came as it came. One side note is that as her Mom’s illness progressed, Lisa’s career choice of nursing home administration emerged. She has since chosen to move to a very fulfilling job of the full-time parenting of her two young children.

The Parkinson’s did impact the kids lives. Again, they alone know how it affected them. We tried to be honest about what we knew. We tried to be rational in making choices about how to live most effectively in light of the Parkinson’s presence in our household. We wanted our children to see that rational behavior helps in the long run. We certainly did not spend a lot of time wringing our hands and feeling sorry for ourselves as if our lives had been stolen from us.

Our children have come to be exactly what any reasonable parent could hope for them to be. They are self-sufficient but able to be vulnerable, to care about others. They are intelligent and mature. Their advice is trustworthy. They are of impeccable character. They make friends easily and are true to them. Others are better off for knowing them and will admit it. While I understand that Mary Ann and I are biased in our assessment of them, I would bet money, real money, that others who have no such bias and who know them would say the same.

How did the Parkinson’s affect who they have become? I can’t know this, but I think it has added depth of understanding, wisdom, compassion and a concern for others to a degree that might have come at least more slowly otherwise. Each of them has found a life’s partner who matches their integrity, compassion, wisdom and concern for others.

Those of us who deal with chronic illness in our families can feel sorry for the burden it places on our children. I happen to have worked with Youth for eighteen of my forty years at my job. While I cannot claim to have conducted a properly constructed study of Youth trends, I can say that those I got to know well, those who had the most, who were given the most, who had the easiest road, also had the most trouble finding their way to happy, meaningful, and fulfilling lives.

What some might conclude to be an obstacle to a healthy childhood and a joyful life, I understand to have brought health and the capacity to experience deep and lasting joy that cannot easily be snuffed out by problems.

I have concrete evidence of the strength of character that has been shaped in our children by Mary Ann’s Parkinson’s. Two years before I was able to seriously consider retiring to be a full-time Care Partner for Mary Ann, our Son-in-Law said to our daughter, Lisa, “why don’t we move to your Mom and Dad’s town to help them out for a couple of years until your Dad can retire?” They lived in a city ten hours from here. They had a two year old and a four year old. There were no job guarantees here. They just did it. I have no idea how we would have done it without them.

Our Son and Daughter-in-Law moved from three hours away to one hour away. They have never said what role, if any, our situation played in that decision. But here they are, close by and ready to do anything within their power to help us. Micah has come and stayed the night with his Mom. He has done things no Son should be asked to do for his Mother. He has done them without hesitation or complaint.

Our love for our children, our purpose as parents to free them to live full and meaningful lives, shaping their own destiny, makes it hard to accept choices they have made to accommodate our needs. They have taught us that part of who they are, who they have chosen to be, what they want their children to see in them, is their willingness to choose compassion and concern — actions, not just words.

What about the kids? The Parkinson’s, a chronic illness, has brought to them more than it has taken from them. I say that so boldly, not because they have said it to me, but because their lives testify to it.

My heart aches for so many who have not had the experience we have had, whose children and/or stepchildren have brought them pain beyond description. How do you manage to survive in spite of their unwillingness to help and for some their willigness to hurt you? How have your children dealt with the presence of chronic illness in your family? How have they been hurt; how have they grown?

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4 Responses to “Caregivers: What about the Kids?”

I made a big, big mistake with Linda. I was trying to be nice and spare her of the challenges as Marlene was dying of her brain tumor. I paid for that later when I realized how long it took for her to realize her mother was gone. It really appeared when I met Judy. We did work our way through it.
My situation was so different from yours. When Mayo gave the diagnosis, We knew there would be a steady progression to her death. It was perhaps selfish on my part but I could deal with it much more easily knowing it would be months rather than years.

Under the best of circumstances it is very difficult to fully experience the impact when separated by geography. There may have been nothing different you could have done that would have made it any easier for Linda. None of us can grieve for another. Each has to move through the grief process as they are able and willing to do so. There are always stresses and strains when those grieving are at different places in the process
As to dealing with the difference in the length of time the process of dying takes, each of us uses the coping muscles in the way that fits the situation. If it is a sprint to the end, one approach to dealing with it emerges. If it is a marathon, another approach. We have simply had to pace ourselves for a marathon, with a finish line that is somewhere in an unknown future, near or far. It certainly reinforces the need to experience the moment we are in fully, embrace it, engage it,look for any life-affirming discoveries that may lie within it. There is a lot to be said for that way of living, no matter what our circumstances.